Today was a great day, overall. We played in the playroom with child life, and went on multiple walks. Sunley’s demeanor is improving in just tiny bits each day. She loves doing PT, and the PT and Child Life staff is seriously fantastic. We absolutely love her team on this floor — they are so friendly, and explain everything thoroughly, and always ask us what we think and if we have questions.

We are trying to convince Sunley to take off some of the stickers and bandaids she no longer needs, but she has so much fear about that, so we are letting her decide that. I soaked her feet in some warm water and was trying to massage her bandaid off from where her ankle IV was, but she didn’t fall for it and that’s ok for now.

I forgot to ask what Sunley’s BUN was today, but I know they are still cautious to give her too much lasix/diuril, so I don’t think it’s improved. However, her right chest tube output only SLIGHTLY decreased this morning, and they were really hoping for a bigger jump. So they decided to try just one day of upping her lasix, and revisiting the issue tomorrow morning.

We pulled the left chest tube (Sunley calls it her noodle) today, so we are down to only one now (she had three after surgery)! Pulling the “noodle” was pretty traumatic, but I’m so glad that we made that decision. I forgot how LONG they are. I could not believe how much tube was in there, looped around. No wonder it was hurting her so much!

Obviously, it is not funny at all when your child is in pain, but her phrase of choice while she was crying was, “Not the noodle! Not the noodle!” and I felt super guilty for holding back a smile under my mask. She’s just so cute, even when she’s mad. Don’t get me wrong — it was still terrible to see her in pain. But at least it was absolutely the means to an end, and that tube was her only source of pain the last few days.

Her saturations have been noticeably higher since we pulled the noodle, and I’m starting to let myself believe that for the first time ever, she is actually going to reach her saturation goals after surgery.

In PT today, she was finally talking to the therapists. They set up an obstacle course for her with some stairs, and asked her if she wanted the easy version or the hard version. She immediately replied, “Well, I’m four now, so we should do the hard one.” By the end of the session, her legs were pretty wobbly and tired, and she said, “OK, I’m outta here!” She rode a bigger bike today, and all the way back to our room, she was talking Hannah’s (therapist) ear off. “You can come to our house and sleep in my mom’s room. And we can have a slumber party and have popcorn and watch movies! You can totally come.” She is also going on and on about having Pho when we get out. She’s on a fluid restriction, so we’ll have to be careful and measure it out, but we are definitely going to make that happen!

Other than Hannah and sometimes Denzel, and her playroom friend Kaylee (the physical therapists and child life specialist) she really hasn’t spoken to the staff here. You can see her guard go up with anyone in scrubs. I’m so happy for her progress, but even what we have right now is such a muted version of the usual Sunley, and I’m so anxious to get her back completely.

As I’m typing this, Sunley starting singing “Grow Flower,” a lullaby I made up for the kids. And I’m realizing this is the first time she has sung since surgery. What a special moment.

We have started forming bonds with other patients on our floor, and Sunley gave them two of her birthday balloons. They are beautiful little girls, and one of them just had her Fontan as well. It’s amazing to come here, and suddenly having a single ventricle heart isn’t uncommon at all. I had coffee with a beautiful new heart mom from Colombia, and it was so wonderful. It’s hard to explain how revitalizing time like that can be for my soul. We also got another visit from one of our favorites, Dr. Schlingmann, who always makes Sunley a priority when we are here. He even brought her a birthday present. Sunley is still pretty grumpy around doctors, but deep down she loves him as much as we do!

God is present everywhere, I know, but it is just so easy to feel with Him here. I always crave that focus and stillness found in the chaos of hospital walls. It really is impossible to actually explain.

PS- We just checked her noodle output, and it’s too early to really call it, but it looks considerably lower! Maybe just a day or two left with that.